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methotrexate or kevzara
My dr is convinced I need to be on either methotrexate or kevzara to get off of prednisone. I am not convinced at that yet since I have been reducing down to 5mg thus far in about 6 months. I haven't ruled it out but was hoping to see how it continues without them. Is this something I should make a stand on with my dr?
If I go to one of these I am not sure which to try. The literature is confusing and somewhat scary. Is one better than the other? I want to be knowledgeable enough to make a good decision when it comes down to it. I do also realize there is quite a cost difference between the 2 choices. I guess I am looking for what some of you have done with either of these and if you found any success or issues? I do realize not everyone is the same in reaction to these. My dr isn't the most helpful at explaining stuff and so gives me paperwork on them. (I think she is too busy to take the time.) I am trying to get a second opinion on my treatment but it isn't easy to get into a new dr quickly and i am not going to stop with my present dr until I get something else definitely.
Are these taken along with prednisone or instead of?
Does one have more side effects than the other?
Is there a set time length to take these or is it lifetime?
I know these are dr questions, but she is difficult to corner on these at an appointment or respond in a message.
Thanks for any help and suggestions.
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What did you do to get free of prednisone and PMR?
I went Mediterranean and low gluten diet. Researched my supplements to find those that might mitigate IL-6.
Went on statins for cardiac risk reduction with CoQ10.
Melatonin ,dark chocolate, stevia to avoid sugar, vitamin D3
and DHEA 10 mg OTC. All of the above are anti inflammatory. Never needed Actemra. Green iced tea in
place of diet cola. Cut alcohol drinks to every other day or less. I have access to good care and doctors.
I am retired so I have time for active stretching with some yoga and Tai chi moves for 1/2 hr every morning when I don’t golf. Plenty of steps on my fitness watch several days a week.
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2 ReactionsMany of the side effects from prednisone are silent. People just aren't aware that some of their medical problems are being caused by prednisone. Your experience with your wife allows you to observe what happens when people are on long term corticosteroids.
I remember someone who claimed to know everything about PMR and prednisone simply based on their experience with having PMR for a long time and reading on a forum. She said the side effects are easy to manage if you know how. She said in all her years of experience she had never heard of a case of "steroid psychosis." I suggested she should actually take care of patients in a hospital setting who are admitted to the hospital for this very reason. I have seen hundreds of cases in just my little corner of the world.
"Psychiatric symptoms have been documented in association with the use of corticosteroids since these agents were first introduced in the 1950s.2 Corticosteroid-induced psychosis refers to a spectrum of psychiatric symptoms ranging from subtle mood changes to memory deficits to frank psychosis that can occur at any time during treatment (See Figure 1, p. 40).3 Mania and hypomania are reported most commonly (35%), followed by depressive symptoms (28%) and psychotic reactions (24%).2 Psychiatric symptoms typically develop three to four days after the initiation of corticosteroid therapy, although symptoms can occur at any time, including after cessation of therapy."
https://www.the-rheumatologist.org/article/when-steroids-cause-psychosis/?singlepage=1%26theme=print-friendly#:~:text=Corticosteroid%2Dinduced%20psychosis%20refers%20to,40).
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For the longest time I thought I was tolerating prednisone well. It wasn't until the adrenal suppression issue was brought to my attention that I became more aware. I used to think, I knew what I was doing but then I realized I had no clue whatsoever.
I became more aware of everything prednisone was doing to me when I did my own retrospective review of my medical history after I got off prednisone. Electronic medical records had every communication I had with my doctors not to mention every lab test, x-ray, CT scan, MRI and all of those kinds of things.
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1 ReactionI was asked on here about my IL-6 testing. I thought I had it done. I looked at the results and it said blood sample not properly submitted. The lab never asked me to sign an ABN. So I assumed they checked it. But others have said its not covered by medicare. Its just a normal blood draw correct? Do you know what makes it uncoverable?
I have never had IL-6 testing done. It does seem like it could be a useful piece of information if a doctor suspects PMR and considers a biologic like Kevzara or Actemra.
I asked my rheumatologist why he thought Actemra might work for me. He said it was an "educated guess" but he didn't know with any certainty. He also said IL-6 is "implicated" in PMR and GCA but there are other cytokines that are also implicated.
"Key hallmarks associated with PMR, such as painful inflammation, can be attributed, in part, to certain immune cells and cytokines, such as IL-6, IL-1, IL-17, IL-10, and TNFα."
https://www.pmrandil6.com/il-6-and-pmr/#:~:text=Key%20hallmarks%20associated%20with%20PMR,IL%2D10%2C%20and%20TNF%CE%B1.
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1 ReactionI tried many of those interventions too. I was a bit shy about the DHEA so I only tried one bottle of that and didn't tell anyone.
My endocrinologist said I had a low testosterone level initially but that normalized after I discontinued prednisone.
Mayo says DHEA should be avoided.
https://www.mayoclinic.org/drugs-supplements-dhea/art-20364199#:~:text=Dehydroepiandrosterone%20(DHEA)%20is%20a%20hormone,slowly%20fall%20as%20you%20age.